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Night window. Flickr/Colin Hughes. Some rights reserved.I live in a world largely hidden from view. Most of my neighbours do
not even know that I exist. I was last seen as a child walking
home from school 26 years ago. In the decades since, I have rarely left my
house; when I do, it is in a wheelchair.

Myalgic encephalomyelitis (ME) struck suddenly for me, with a viral
infection, although for some the onset is more insidious.

Within a few months, it had stripped me of the ability to walk or
talk, to move my arms or to open my eyes. It entombed me in such agonising pain
that life was reduced to the drawing of each breath. My family and doctor
expected me to die at any time. I survived, but for years it was a living
death. I was too ill to tolerate any stimulation, and knew nothing but pain and
complete darkness.

My personal experiences have moved me to campaign for greater
awareness of an illness that affects an estimated 250,000 people in the UK, and
millions worldwide. ME has been recognised as a neurological condition by the
World Health Organisation since 1969. Symptoms include overwhelming fatigue
made worse by exertion, pain, sensory sensitivity, sleep disturbance and
cognitive dysfunction. The level of severity varies greatly between
individuals, with most sufferers able to maintain a degree of presence in the
outside world.

But severely affected ME sufferers “are similar to a critically ill
patient 24 hours before they die, except they live like that for years and
years,” professor Ron Davis of Stanford University, one of the
world's leading scientists in this field, told me. Known internationally
for his work on the Human Genome Project, Davis has now set his sights on
discovering the causes of ME, and ultimately, a cure.

The use of the name “chronic fatigue syndrome”, and the adoption of
indistinct diagnostic criteria, has allowed ME to be swept under an umbrella of
generalised fatigue states. “The medical profession has largely ignored this
disease,” Davis told me. “This is the last of the
world’s major illnesses to be so poorly understood.”

Davis was speaking in support of #MillionsMissing, a worldwide campaign
raising awareness of ME and calling for greater research investment in the
illness. Demonstrations were staged in
May and September 2016 in 25 cities around the world,
including Washington DC and London. Powerful pieces of protest art appeared in
prominent political locations. In London, hundreds of pairs of shoes covered
the pavement outside the Department of Health, a display mirrored in other
cities worldwide.

“These shoes represented the
millions of ME patients whom the outside world never sees,” I was told by Jennifer
Brea, founder of the #MEAction advocacy group which organised the protests.

The initial #MillionsMissing demonstrations in May
received 100,000 mentions on social media and generated 38,000 petition
signatures. Such was the success of the campaign, that a second wave of
protests took place in September, generating even more interest.

No terminology exists to describe lives blighted by
the severest forms of the illness. Confined to their bed, and often tube-fed,
those afflicted are so intolerant of any light or sound that even a whisper can
induce a dangerous worsening of symptoms. Pain is usually extreme and
unrelieved even by morphine. Paralysis, seizures and incontinence are not
uncommon.

No terminology exists to describe lives blighted by the severest forms of the illness.

“The standard tests that doctors conduct do not
show any abnormality and so they conclude that there is nothing wrong with the
patient,” Davis told me. “If they looked deeper
they would find a large number of molecular problems.”

As one of the ‘missing millions’, over time, I have made progress.
But I remain almost entirely house-bound and dependent on full-time care. It is
not known why some people with ME improve while others do not, though avoiding
over-exertion and living within limits generally gives the best chance of
improvement. There is no universally effective treatment and little by means of
symptomatic relief.

Full recovery is rare, and in the most severe cases
ME can be life-threatening. Even the true scale of fatalities is unknown, as
Davis explained to me: “The cause of death is usually listed as something else,
so we don’t know how many die from ME.”

A critical part of the #MillionsMissing campaign
is highlighting the lack of international research investment. A study last year
comparing the impact of 21 major illnesses, including cancer, stroke and heart
disease, found that people with ME had the lowest quality of life by a
significant margin. Yet UK government
funding of biomedical research over the last 10 years is estimated at just £1.8
million. By contrast, £166 million was
directed towards heart disease in 2012 alone.

It is a similar situation in the US, where in 2015 the National
Institutes of Health provided less research funding for ME than for hay fever.

Thousands of existing studies
have shown abnormalities throughout the body, but the paucity of funding means
that no overall picture or diagnostic test has yet been established. In common
with other illnesses throughout history, the gap in biomedical understanding
has been filled by psychological explanations, with grave consequences for
those with the illness.

Research funded by the UK government has focused heavily on
behavioural therapies – in particular, cognitive behavioural therapy (CBT) and
graded exercise therapy (GET) – despite the fact that these treatments run
counter to physiological understanding of the illness and often make it worse.

A detrimental response to exercise – known as
post-exertional malaise – is a cardinal feature of ME, and numerous studies have shown
abnormal physiological changes to support this. A landmark
study demonstrated a marked increase in symptoms
and disability when exercise capacity was tested on consecutive days. Such results have not been seen in other
illnesses and may be unique to ME. Renowned ME specialist Dr Paul Cheney told an international conference
in 2010: "The whole idea that you can take a disease like this and
exercise your way to health is foolishness. It is insane."

As Davis told me: “The hypothesis behind GET and
CBT is that patients have “false illness
beliefs” and are “afraid” to exercise.
The recent molecular findings indicate that this hypothesis is clearly wrong.
Patients often get worse, sometimes irreversibly, when they exert physical,
emotional or cognitive effort over their own personal limit.”

The 2011 PACE trial claimed that these treatments
could help ME, but has been strongly criticised within patient and scientific communities.
In February, Davis was among a group of eminent international scientists who condemned the trial's “major flaws”. In a recent dramatic development,
a tribunal ordered Queen Mary University of London (QMUL) to release anonymised
data from the PACE trial, to allow independent evaluation of the results. In published reports it was claimed that more
than a fifth of patients recovered following GET or CBT. During the trial,
however, the measurement of what constituted recovery was altered. When the data was reanalysed using the original study
plan's definition of recovery, neither GET or CBT had any significant benefit.
Yet this study has influenced NHS policy for years, with many doctors still
rigid in their belief that the illness is psychological.

“When standard tests are
normal, doctors develop a belief that it is all in the patient's head
– that they have a psychological problem,” Davis told me. “Even when confronted
with molecular data that shows a clear abnormality, the doctor refuses to
change his or her belief.” Davis and his
team have been examining metabolites, molecules produced by cells during
metabolism. Studying them can give information on what might be going wrong in
processes such as energy production. Davis has recently found extensive
alterations in the level of over 100 metabolites in the serum of ME/CFS
patients, compared to healthy controls. Furthermore, a recent study by Dr Robert K. Naviaux,
known internationally for his work in human genetics, has shown
"comprehensive metabolic deficiencies" that, according to Davis in an
online commentary, mark the most "important and groundbreaking"
development in ME research so far.

This is in addition to
long-standing findings from many other researchers, showing altered patterns of
cytokines (signalling molecules that regulate immune response) and other immune
cells. "Much of this data has been known for years, and disregarded by
doctors," Davis told me. "I have shown the metabolic data to several
doctors, who shake their head, "no", and continue their belief that
these patients need psychiatric help."

The resulting picture for those with ME is one of desperation.
Profoundly ill and disabled patients are left in the wilderness with little or
no medical support, often blamed for their symptoms and forced into treatments
that cause deterioration. Extreme symptoms, such as the inability to swallow,
may not be taken seriously by professionals, leaving patients at serious risk
of life-threatening complications.

The resulting picture for those with ME is one of desperation.

My suffering would be reduced if I knew that medical science was
investigating the illness to the best of its ability. The reality is very
different. Almost no research has been undertaken on the most severely
affected, meaning that the distinct neurological and immunological features
prevalent in this group of patients are completely overlooked.

But it is a situation that Ron Davis and his team
are determined to change. Working in collaboration with doctors and scientists
from around the world, Open Medicine Foundation
is collecting samples of blood and other bodily fluids from some of the most
severely ill ME patients. These samples undergo cutting-edge analysis,
including DNA and RNA sequencing. "We are measuring everything we are able
to measure: creating a huge data-set, the biggest ever collected on humans, and
looking for patterns," Davis told me. "It's unlikely that there is a
simple genetic cause for this disease, but very likely that there are genetic
components involved in what particular symptoms are experienced by patients."
Existing studies have shown
changes in gene expression that correspond to some of the key symptoms of ME,
including immune disfunction and poor energy production.

The result of all of this is the generation of
unprecedented amounts of data on the severely affected, which can be used to
identify biomarkers, causes and potential treatments. “This disease affects
many bodily systems and investigating it requires researchers from diverse
specialties,” Davis told me. “I believe that ME research will lead to
discoveries about energy utilisation that will be relevant to most chronic
diseases and ageing. It will be heralded as the most important medical
breakthrough of the twenty-first century.”

Other teams around the world are also working to
find answers. ME Research UK is one of a few charities in the UK supporting biomedical research
into the illness. They receive no government funding and rely solely on
donations from supporters, but to date have funded 42 studies, with a number
currently active. Dr Neil Abbot, Research and Operations director, told me:
"To date, the most important findings have
centred around the autonomic nervous system, which controls some core body
functions such as heart rate, digestion and breathing; the circulatory system,
particularly the heart and blood vessels which supply oxygen to tissues; and
the musculoskeletal and immune systems."

ME Research UK was part of a consortium of
charities that set up the UK Biobank, at the London School
of Hygiene and Tropical Medicine, in May this year. It contains samples from
over 500 patients that can be used by researchers anywhere in the world. Meanwhile in Australia, a team at
Queensland’s Griffith University claims to have found immune markers that could
be used to diagnose ME with a blood test.

But for Ron Davis, the fight is also personal. His
32-year-old son, Whitney, is bedridden with severe ME. At the end of 2015, Davis made a personal plea for
funding of his work, explaining that his son’s condition is so severe that he
is at risk of dying. In a social media campaign he wrote: “I know I’m not the
only one working on this disease but there are too few researchers, too few
medical specialists, too little research funds, and too many patients. I know
I, or someone, can figure this out. It requires a lot of new data and a lot of
thinking.”

One year on, the struggle continues. “Lack of
funding is a very serious problem. Having review committees and administrators
not believe that ME is a real disease makes it almost impossible to do research
on ME,” Davis told me. “Long term substantive funding is required.” It is a
view echoed by Neil Abbot: "In reality, for breakthroughs to occur, there
have to be many, many groups around the world undertaking programmes of
research across a range of fields. At
present funding is sparse and researchers see little chance of high level
investment."

Along with funding for quality biomedical research
like that being undertaken at Stanford, education of medical professionals is
also urgently needed. Some of my most traumatic experiences have come at the
hands of professionals who lacked understanding of ME. When I fell ill as a child I had many tests,
including CT and MRI scans. When the results showed no recognised
abnormalities, attention turned to investigating my mental health. I was
treated as having a psychological illness, despite there being no evidence to
support such a diagnosis. The treatment given to me was often brutal, based on
the belief that I could and should be forced out of my state of illness. On
numerous occasions, I was forced to walk until I collapsed. The physical and
emotional consequences of such treatment are felt to this day.

Until there is greater scientific understanding of
ME, doctors are limited in how they can respond to the illness. But of greater concern is a perceived
unwillingness among many professionals to listen to and respect what their ME
patients tell them. Lack of knowledge should not equate to lack of compassion.
I fear admission to hospital, knowing that I am likely to encounter doctors who
do not believe I am physically ill, and who view my symptoms as erroneous
beliefs to be stamped out. 26 years on I remain vulnerable to the same
mistreatment I suffered as a child, a situation which is unacceptable.

The physical and emotional consequences of such treatment are felt to this day.

“Patients suffering from ME have been effectively
ignored for years by health agencies and mistreated by the medical community,” Jennifer Brea told me. “People have reached a breaking point. It’s time to demand fair
treatment.”

The demonstrations in May and September drew
attention to the devastating scale of ME: not only the illness itself, but the
political neglect that allows it to continue to destroy lives. It is not only
those suffering who are affected, but the wider world too. Those trapped in
darkness and pain are human beings rich with potential. People of extraordinary
tenacity and creativity, who have much to offer. Their loss is the world's
loss, too.

The pair of shoes I sent to the London demonstration
symbolised the fact that I have rarely worn shoes in three decades. In
addition, I sent shoes in memory of a close friend who died, aged 30, after living with ME for most of her life, and
pairs to represent other friends too ill to even read of the campaign. When the
protests return next year, I will again speak out through those empty shoes.

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